In health research, there is a growing understanding of the need for public engagement. Rather than focusing solely on the research itself and depending on the publication of papers and involvement at conferences to “spread the word” about our results, we are being encouraged to engage with community groups to inform our research questions, methodologies, dissemination and implementation strategies.

This blog aims to explore the challenges that we, as a group of health researchers in adults with intellectual disabilities (ID), have come across. It does not provide solutions to many of the barriers and potentially will create more questions than it answers so here goes…

Levels of ID

Translating scientific information into understandable non-jargon advice is a task that every clinical health professional faces when reading a research journal or new guidelines. This is a learned skill and, as a dietitian myself, I use established leaflets, handouts and websites to help the process. Clearly people learn and understand information in different ways and I feel that, in order to be effective, any clinician needs to have the skill of communicating often complex information at an appropriate level for the patient to understand.

Working with people with ID adds a whole new level of skill needed. Leaflets in “easy-read,” guidelines and suggestion that can advise us on how to present information for this population group are widely available (see my first blog on working with adults with ID – Kim please can you add a link here?) but, because of the wide range of abilities in these people, there will never be a one size fits all leaflet to help us. It is up to the clinician to adapt their approach and enlist the help of supporting people, where necessary.

Adults with ID are often isolated from mainstream community activities. Those with mild to moderate ID may be able to integrate with or without support or may attend increasingly rare “day centres” or form new groups to attend. Those with severe and profound ID that have more complex, additional needs are further isolated and may have reduced access still. Their level of understanding and likely difficulties with speech and communication can make it difficult for us to engage and to check their understanding of information. Possible ways to engage with those with the most profound ID could be through families and their other supporting people or through charities and organisations that represent them. Never-the-less, a third party adds another barrier to getting their voices heard and represented.

Social media

Channels such as twitter and facebook and even blogs like this are perfect for sharing information, views, photos and letting the world know what’s happening at the university. However, this is only effective if people own the technology (e.g. iphones, computers, tablets etc), know how to access it and are literate. If not, then the “audience” very much remains those whose abilities exceed a certain level and exclude those who are illiterate or do not have access to the technology. Organisations that translate information to easy read exist (see previous blog) but again, this only increases involvement of those with mild to moderate ID and will always still exclude some. Or again, do we depend on a third party to represent them?

Face to face

Social media, easy read information and linking with organisations that represent people with ID are all ways to engage with people with ID, share information and gain an understanding of their needs and views. However, these methods will always exclude a proportion of the ID population.

I personally feel that face to face contact and regular contact with individuals with ID is the most effective way at engaging and building relationships with individuals and groups and that this should run alongside other methods. Familiarity is essential to build trust and rapport and this can only happen over time and with regular contact.

However, this is time consuming and, in terms of staff time involved, expensive. It is difficult to explain the value of “having a coffee with a group of adults with ID at their weekly meet up” to those who are not used to working with this population group but my view is that, without this face to face contact the risk is that:

True collaborative relationships between academics and people with ID will not be built.

We will not get a real understanding on ground level of the values that these people hold.

Our communication will always be one sided (teaching what we know without learning what they know).

Our research may not be relevant or wanted by those who we aim to help with our research.

Suggestions on how to engage with isolated groups

Build links with charities and care provider organisations that work with people with ID. Ask specifically about those with severe and profound ID and whether there is a better way for the university to build links with them.

Ask to go along to informal meet ups where there will be people with ID, for ex ample day centres or other pre-formed groups. Chatting to people with ID and their support networks on a regular and informal basis can help us get an understanding of the values and difficulties facing this population group.

Ask to be able to attend any more formal group meetings where agendas are being discussed. This may allow for opportunities where the university can help in terms of research and results dissemination directly with the ID community.

Consider where people with all levels of ID would like to meet. Is a home environment best or is there somewhere else better suited.

Meet individuals and groups with an open agenda. Be ready to listen to what is important to people and be led by them.

Keep face to face contact regular

Keep the university in everyone’s’ minds (families, organisations, people with ID themselves) as a partner in terms of a source of information and an organisation with whom to share views and experiences. Ways to do this could be:

Regular contact in person

Wearing a familiar but informal “uniform” such as a t-shirt with a logo. Being recognisable is important when different staff my represent the university over time.

Sending cards e.g. In the summer and at Christmas to keep up contact. These cards could give a brief update on what’s happening, links to social media and contact details if people want to keep in touch. Cards could also be in the form of newsletters regarding what is going on in the department and future studies that may be of interest.

Having active social media for those who are able to use it.

Regular events, for example 2-4 per year run by the university on health subjects related to particular groups of adults with ID and their support network.

Make engagement with the ID community part of every researcher’s job (even if it is a yearly activity). If all researchers are involved, the workload is less per individual. It also ensures the continuity of engagement and I feel will value the researchers own career development as they gain a greater insight into the lives of people they research, at ground level.